What Are You Thankful For?

Wow, can you believe we are almost out of January already?  While the north east is digging out of several feet of snow and ice, here I am in the south looking at my weather for the week hoping for peeks of springlike weather already. Indeed, next week some of us will be watching for a certain rodent to predict whether we will have an early spring or six more weeks of winter weather.  I confess I'm one of them...not so much that I believe that a groundhog can tell us that information, but because I love love love warmer weather and the blessings spring brings. Don't get me wrong, I like all of the seasons and what each brings. And in the last day or so, I'm thankful that my friends in the northeastern states are warm and safe despite all the snow they've been getting.

This morning I got the pleasure of sleeping in a bit. Not my favorite thing to do because I tend to get more accomplished when I am up by 7:15 each morning. But this morning I missed my alarm, I'm guessing because I needed the rest. Baby Bear was awake with me and joined me, as he sometimes does, in my "quiet time." He looked at me, shivered a bit in the cooler morning air, and said "Cold." This Mama's heart rejoiced. He communicated with me! I was so proud of him. I love those moments of clarity when he can use words to tell me what's going on his world. Yes, i am very thankful for that. I believe he was thankful that I brought him a blanket to cuddle up in, too. 

As I read today's bible passages (Luke 22:39-71; Genesis 40; Psalm 31; and Proverbs 28, in case you're interested) I became aware of lessons that hadn't really occurred to me before. I'm not comfortable sharing those just yet, but I am thankful to still live in a country where I am free to read and study God's word, and take to heart what he wants to teach me each day. I feel sad that on so many occasions I've neglected to pick up that precious book (or in today's world, bring it up on the screen) and immerse myself in it.  A meme on Facebook said it perfectly: The Bible is meant to be bread for daily consumption, not cake for special occasions.

I could come up with more that I'm thankful for: my husband, who traded places with me so I could go into the bedroom to finish my quiet time in, well, quiet this morning. My brother, who has helped out so much and taught me so much since moving in with us. But i have a young man who wants attention. I'm thankful he's in a good mood this morning, and I pray it continues. It means he's in good health. Now, what about you? What are you thankful for this morning? 

Older pictures of me and my boys. I am thankful for these guys all the time.

Autism Wednesday: Confessions of Life with Baby Bear

So....I haven't written in a long time. Oh, I've had intentions of writing. I even came up with a blog post or two...that never made it from my computer to here. Life has been filled with the usual ups and downs that find us all. Baby Bear has done so great at times and I've wanted to share those moments --and then there are days that really just make me want to throw my hands up in surrender and say, Come take him. I can't handle it anymore. Those are the times that really break my heart. I know there are parents who have had to make the painful decision to place their child in a residential home of some sort. The one time we came really close to actually doing it --we were informed that the state wouldn't take him. They have no place for young adults with moderate to severe autism. We never pursued it so I have no idea how true that statement is. I do know, however, that in the hierarchy of state funds, adults with special needs are very low on the totem pole. But you know what? Honestly and truly I don't want to place my son in a home that isn't mine. I know there are loving people who become caregivers, and I also know that one day he may very well end up in one anyway, due to the deaths of The Hubs and me, or that we are just too old and frail to care for him properly. At the same time, I can't imagine not having J in the house each night.

The times that I do consider placement are born out of frustration, anger, and fear. This is a home we plan to stay in for a very long time if we can. We are the ones responsible for repairs. It makes me feel better that I don't have the worry of a landlord throwing us out because J broke something, but it also makes my heart sink when I see the damage that has occurred in J's room already. Sometime very soon, as in the next few weeks or so, we will be learning all about replacing dry wall. At the same time, we are considering what to put on the walls that is sturdy enough to withstand the banging, but wont seriously hurt his hands. Quite obviously plain, painted walls aren't going to cut it in his room. If a crack or hole is knocked in it, his OCD  kicks in and he starts picking at it, particularly if he's angry or bored. See where this is going? Yeah, not pretty. There are books, magazine articles and blog posts galore on baby proofing your home.  Baby Bear proofing? Not so much. I feel like I'm paving the way on this one. 

So...yeah. That's pretty much life here at Dottie's Life these days. Mostly good, some not so good, and learning to tread water again. I won't promise to write posts because we've seen how that goes here. But please don't give up on me. I have lots to tell you about. I just stumbled once again and let life pull at me. I want to write at least three posts a week, if not more. If I lag, please feel free to contact me. I love hearing from you even if I don't get a chance to respond.  For now, housework calleth, as does Baby Bear. He's "talking" to me in his own language, wanting attention. I do love his sense of humor.

 Baby Bear doesn't like getting his hair cut very often due to sensitivity issues. But I do love his mischievous smile. Doesn't he clean up good?

Autism Wednesday: Kyle's story.

 

 My Dear Readers, today is April 2, known as World Autism Awareness Day. This is something very important to me, as my son Jesse has autism and mental retardation due possibly to other factors as well as lead poisoning as a child.  Each Wednesday I will be bringing stories from parents, information about autism, and hope. 

   Today I bring to you the story of Kyle, as told by his mother, Janice.  

My Mr Man Kyle is 22 yes I call him my Mr Man he always says to me I am Kyle lol ..
When Kyle was 2 he was vaccine injured by the MMR vaccines .Prior to the vaccine
my Kyle was talking , walking , eating and sleeping . He was watching TV like any child that is 2 would do.
I remember it like it was yesterday him sitting in front of the TV eating cheetos' and watching Barney lol
During the nights I would wrap him into his crib and he would sleep through out the nights never any problems with him sleeping & his words were age appropriate , every milestone that a child that was 2 years
met in everyday ..
The day , yes we moms know and remember that day from Hell when we took our children into the Doctors to get their Wellness vaccines thinking we were protecting them from the world , the many diseases that it was going to protect them from.So they said . that you will hear through out my story .
I brought him home as the sun was going down. I was standing in my kitchen when I heard my Kyle started to scream a high pitch scream. We as moms with vaccine injured Kido's know all too well about .

As I picked him  up to hold him in my arms while he was screaming and turned blue was bareley able to hold him due to his body stiffening up and his back was arched in full blown seizure mode.

The scream felt like it lasted for what felt like an eternity to me it ; little I know that his screams and his seizure was due to him being vaccine injured .. I do remember calling my Mom and telling her it was from the vaccines but at this time back in 1992 nobody had heard of autism or what a vaccine injury was about. 

 

The next morning I couldn't find my son. When I did he was hiding behind the couch . After that he stopped eating he stopped talking and he stopped sleeping .. I AM THE MOM WHO WAS TREATED AS WHAT THEY CALLED THE Refrigerator mom, blamed for not caring for my son by not 1 not 2 not even 3 but many so called Psychologists and psychiatrist who knew nothing about autism or vaccine injury .
This started my journey with my son in a whole new life of hell is what it felt like with the unknown
We finally took Kyle up to UC Davis Children hospital to get a final diagnosis for him
Brian Seigel, top psychiatrist who is and was the top Autism Specialist gave me the words of him being severely autistic & Mild Retardation
The story goes on from there ...........
Not too many people heard of autism and how to treat a child on the Autism Spectrum ,
I was very blessed to have found a School for Kyle, whose teacher not only knew [about autism] he helped Kyle in so many ways: to go to the doctors ,helped me to get him to the Dentist and other vital life skills he would be needing for the future and as part of society.
Kyle did wonderful, he even Graduated from his Severely Handicapped Class with Honor of being the most helpful to others.' Kyle is such a great helper to me and he  always loves to help others.He is a giver.It is a gift he has within him that the vaccine damages couldn't take away.

Autism Wednesday: Is it Better 1 in 50? A Rant

A few days ago a page I follow on Facebook posted the following :

Admittedly, I haven't read all of the studies, but neither do I put much credence into studies that are funded by the vaccine industry or anyone connected to them in any way. And I certainly don't need studies to know that  my son was affected by vaccines. But before attacks me with how safe or unsafe shots are, that one is for another day. Today I want to bring up a different aspect. Bear with me. 

I happened to glance at the some of the comments below the photo. Being that the page speaks much about the harm that can be done with vaccines, most following are going to comment positively. However, like anything there are those who oppose and like to have their voices heard as well. In most cases, not a problem. I believe in free speech.

Then I read a gentleman's flippant answer: "Better 1 in 50 than 100% dying of smallpox, just sayin." 

Excuse me? My child having autism is the key to keeping everyone from dying of a disease that has been eradicated since 1980? You can read more about smallpox here. 

Smallpox was a horrible disease that did a lot of damage, especially to Native Americans who had never before been exposed to the disease. But it never once completely eradicated 100% of the people exposed to it.  The young man who commented (tried to) used emotionalism and scare tactics to try and prove a point. Those are used almost on a daily basis in our society for one reason or another.  My point? Become educated. Don't simply accept what is being said at face value. Do the research. Learn all you can. And then educate others. Put the message out there, regardless of how you feel, but do not belittle others for their beliefs and decisions. 

At any rate, I feel we are going in the wrong direction with shots. Mass vaccinations regardless of circumstances is not the answer. Especially when no one is paying attention to what is in those syringes. We need to take a closer look at all this, not just allowing them to happen without question because we've been told over and over again "it's the right thing to do". 

Regardless of my stance on shots (for the record I allowed vaccinations, disregarding my gut feeling about it and that was before people were discussing possible connections between MMR and autism before J's diagnosis and even a few after, but will no longer allow them as a matter of course) I am not here to tell you what to believe about them. All I want to do is encourage further study and wish to stop the hatred. Things get heated on both sides of the debate but one thing sticks in my mind, and this was  in the autism community itself. One woman stated in the heat of the moment "If you don't vaccinate you deserve for your child to contract some horrible disease and die from it. In fact, I hope they do."  Seriously? How can anyone have that much hatred in their hearts for someone that they hope that a child dies?

In case you're wondering, autism is not the only harm that can potentially come from vaccinations. Again, do the research. Autism and brain damage are what my son deals with, and yes, I believe that vaccines were a part of what caused it. 

But wouldn't you rather he have autism than the measles or the chicken pox? No. Those two diseases last a week or two in most cases. They are largely uncomfortable but once gone, they're gone and the body's immune system is stronger. Autism is with my son for the rest of his life. Although I and anyone else who cares to get to know J know that he is intelligent, his functional age is supposedly that of a toddler--around 14 months--according to the doctors who tested him. 

As an adult he still isn't fully potty trained, although we work on it a lot. He can dress and feed himself and otherwise take care of his needs but in some areas he still needs help. He won't understand you if you speak full paragraphs in one fell swoop but he does understand more clearly if you speak two or three word sentences to him.  He can't be left alone for long periods of time because he can't cook for himself and in case of an emergency he might get agitated and not know what to do. 

When J was younger he had no fear. He had no worries of stepping out of a window onto a fiberglass roof or jumping out of a window (Yes, we had serious locks put on all the windows so that he could not open them and he was unharmed in both situations.). He could figure out how to unlock doors or in one case remove a (basement) window from its tracks so he could go into the back yard and swing. He was a runner between the ages of 2 and 9 and although he never got past the block we lived on at the time, my heart goes out to parents whose children go missing.  I've dealt with well meaning and even a few not so well meaning social workers who thought to help but in many cases just added to my frustration as a young mom trying to figure all this out.
 Now that J is considered an adult he no longer is a runner. He would much rather stay home. But although he would never jump out of a window (he no longer has a chance, we live in a one level ranch now), he does have frustrations that he sometimes takes out on my walls. Not often, but enough so that The Hubs has a wall to fix in J's room already.

His communication skills are emerging more and more, slowly but surely. He still cannot speak very much and sometimes when he can't get his needs or wants known, he cries. It's devastating, not knowing what is upsetting your child. 

And while most parents  look forward to the proud moment when  Susie or Johnny graduates from college and moves out on their own although they shed a tear or two, I stay awake wondering who will care for my son should the day come when The Hubs and I no longer can or are not here anymore. 

So no, young man with the flip attitude. No, it is not "better 1 in 50". I will not say it is better to have a disease no matter what it is, but honestly, I much rather would have dealt with measles, mumps or chicken pox than deal with autism. That's my thoughts on after 19 years after the diagnosis.

I welcome comments and I know what I spoke of here can cause heated discussions. I ask that any remarks be kept civil and family friendly. I believe in free speech but foul language or hurtful attacks will be deleted immediately.  I also would love to hear your autism stories, whether here or through my email, duckigrrl@gmail.com. Just please put "autism" in the subject bar so I know.
Thank you.

 

Autism Awareness

Autism awareness month is just around the corner. For this family though, that's pretty much every month. Every day we deal with it. We aren't alone in this.  The prevalence is 1 in 88 births. For males, the rate is higher. We still do not know what causes autism. Although there are a lot of theories out there, it's frustrating that an awful lot of money seems to be spent on "proving" what doesn't cause autism. Personally I think there are a few culprits out there, but I'm not a scientist so no one really cares what i believe on that point. 

Yes, I do believe that vaccines are part of the problem. I also believe that there are other factors involved. Furthermore, I believe there are things that we can do to help our children. Are children with autism ever totally "cured"?  I don't know, quite honestly. 

In the next several weeks, each Wednesday I would like to post about autism. Facts, websites, personal stories from parents/relatives/ those who work with children and adults with autism. Please feel free to contact me with your own stories: the good, the bad and the ugly. Do you use medications to help your child? Therapies? Alternative helps such as diet, essential oils? Please feel free to contact me via email (duckigrrl@gmail.com). Please put Autism in the subject line so I'll know.  Also, feel free to contact me on Facebook or leave comments here. I do ask that messages be respectful. Please be aware that I may share what you tell me, although I will not use names unless given permission to do so. 

Celebrating 21 Years

Twenty One years of blogging? Ha! Not even close. I've been writing, off and on and mostly for my own pleasure, at least since I was 14. But nope, that's not what this post is about.

My J Man, Baby Bear, Singing Bird (as dubbed by his Granny), JJ is now 21. Well, officially he's been that for a week or so. My baby boy is no longer a baby. At least, he isn't anymore in the world's eyes. But to this mama, the five foot nine or so inches tall guy with the long hair and beard and laughing eyes will always be my baby.

I say this a lot, but it amazes me how fast time flies. One day he's born after two days of on again off again contractions. Lots of walking, resting, hanging out with family until things really get moving and it's time to go to the hospital. We had no car at the time so my niece had to chauffeur us. And somehow that meant she had to leave my mother at the grocery store! Thankfully a family friend was also shopping that day and was able to take Ma home.

Next thing I know he's walking on tip toes, stacking legoes taller than himself, and spinning everything from toys to quarters to cookware lids to himself, flapping his hands a lot, and at times, turning his head and screaming. Things I recognize now as a few indicators of autism (there are a lot more but we'll go into those another time).

Jump ahead a few more days (years, truthfully) and suddenly here he is, all grown up. He's come a long way, and he continues teaching me things every day. I wonder what the next 21 years will bring?

Packing, Moving, and Hiding Places...Or, Have You Seen Where J Hid the Packing Tape?

For at least two years now I've been wanting to move. For the past six months, it has turned into a must move. While I'm grateful to have a roof over our heads, this place really isn't much more than that. Even with the little we pay in rent for this place, we continue to struggle financially because The Hubs works so far away (about 50 miles one way, five days a week) for pay that is good but not great. So we are looking for a place closer in. No rentals that we can afford have shown up in the city he works in (that isn't an apartment, in any case. Those wont work because J gets very loud much of the time and we have pets) so we have found a place a little farther out. 

This new place is small from what I understand, but I'm hoping this is what we need. We haven't seen the place in person yet --hope to this week. But The Hubs has checked the maps online and it looks as if he can shave off at least ten miles each way in heading to work. If this is the case, then we're going to make the place work. If the mileage is the same... we will be back to square one until another answer comes along. 

In the meantime, I'm already packing. So far not much has been boxed up other than cookbooks, kitchen decorations, linens, and a few baking pieces that I can live without for the next few weeks. However, I've discovered a few things about our dear son since last night. For instance:

• Packing tape and markers are fair game and will be hidden if left out over night (I still haven't found the hiding place for them and I can only hope that the tape is still on its dispenser. Packing tape is evil without that flimsy piece of plastic).
• In an effort to be helpful and put away things his crazy parents left out, a roll of toilet paper has been found in a cabinet holding rarely used bakeware.
• For some strange reason he decided that we needed to keep an empty tea box. It too, was found in the cabinet with the bakeware.

As for myself, while I continue to look for the absent tape, I will keep packing as I can. I am discovering that moving is the perfect time to declutter. While I am still hanging on to certain magazines despite the fact that most of that stuff can be found online, I have gotten rid of quite a few that I no longer need or want, as well as about half a trash bag full of empty jars of various sizes and shapes. In a fit of "jars are great! frugality", I began saving them.  Salsa, pickle, sauerkraut, you name it. Big, small, fat, skinny. Did not matter. Now granted, many of the larger ones have been put to use in my pantry, but I still had  have many empties lurking, I'm pretty sure of it, in dark corners, waiting to be put to use. 

I do know, sure as I know my own name, that once I've found all the empties and disposed of the ones I'm sure I don't need, that I'll find a use for them. That's the pack rat in me talking. After all, I was taught well by two loving parents who, although neater than I am, kept many things. My mom still does this. You need batteries? She has them. Bless her heart, it will take her about an hour of searching through her many boxes, but she has them squirreled away in a closet somewhere.  Nevertheless, it's time to fight the packrat gene and do away with things we really do not need. 

As I tend to do lately, I apologize for not posting very often lately, but I will return. I promise you this, to the best of my ability I will not give up writing here. There is still much to say about J, autism, moving, life in general. In the meantime though, either by the end of it all I will have packed up almost everything to give the place a good scrubbing  and manage to live here a little longer, or we will move quickly so that we can all get back to normal. Or at least a reasonable facsimile of it, just before the holidays descend upon us. Have a wonderful day. I'll talk to you again soon.
 

Gratituesday: I Have My Son Back!

 Join us for Gratituesday at Heavenly Homemakers!

Happy October 1! 

This year has certainly flown by, hasn't it? I cannot believe we are in the beginning stages of fall already --although the cooler temps this morning makes it very believable! It's time to start looking for a homemade hot chocolate recipe that we can possibly keep on hand. One that doesn't call for coffee creamer powder, preferably. I'm looking forward to hot spiced apple cider to drink on occasion as well...and looking at the specter of Holiday Pounds Future. As in the ghost of all that yummy food that seems to come up between Thanksgiving and Christmas. I am hoping this year I can indulge and still at the very least maintain my weight at the time, if losing is going to go out the window for awhile.

But this morning I'm thankful for many reasons. This has been a season of change for my family, and more changes are to come. I chose to lose weight and get healthier so I can better care for my family. This is still an ongoing project. J had a few frightening meltdowns earlier this year; one in particular that caused us to wonder if he needed to be in a home that wasn't ours. That was a very heartbreaking thought and we were close to making that decision. However, help arrived and the tide has turned. Thanks to a few changes in medication, I am happy to say J is my sweet, happy young man again. In three months there have been no meltdowns. He has gotten frustrated a time or two and they could have resulted in meltdowns, but I've changed as well. I don't want to be the high strung mama who feeds off of his moods. When I can stay calm, he does better. I thank God that he has changed both of us in that. 

With the change in medicine has come clarity for J. He's getting further along in potty issues. We still have mishaps but he's doing so much better. We aren't 100% there, but there is hope.

Also, J has been open to learning new things that used to confuse and frustrate him. He understands a lot better. He wants to be involved in family life, and life in general. He's back to helping me with laundry, pouring water, putting dishes in the sink, and watching out the window to see what is going on in the world. He even ventures out to the porch to sit and watch at times. He's back to being my humming, happy child.

And me. I'm figuring out that I don't have to do every little thing for him. He is capable of doing for himself. For example, peeling a hard boiled egg or a clementine. I have to "start" it for him, but he sees now how to complete the task. It won't be long at all before he do the task on his own with no help.

I was able to watch J the other evening. He has taken a lamp apart and the Hubs was sure it was now useless. However, sitting in the darkened living room was not J's idea of a great time. He got up, took Dad by the hand, and led him to the kitchen. Dad thought J wanted to have a bite to eat and got him a biscuit. Never one to turn down food, J ate it and got himself a glass of water as well, but he was not done with his mission. He led Dad to the cabinet that holds our laundry supplies and our light bulbs. He guided his father's hand to the lightbulbs, then made him pull out the lightbulb. The Hubs explained that the lamp was broken and would not work, but J was insistent. He took the bulb, put it in the lamp, plugged it in, and sat back, satisfied. His task was complete.

Needless to say, I am very thankful for this young man of mine. I am thankful to our Heavenly Father in showing me that patience brings about good things. Don't give up hope. 

This post is linked to Heavenly Homemakers' Gratituesday .

Early Morning Autism Musings

It's after five in the morning. Two kittens affectionately known as the Zombie Twins have battled to the tired and are now asleep on my legs. A restless Baby Bear is slowly falling asleep on the other side of my bed after being up since at least three AM and playing musical beds and gigglepalooza in the kitchen. Those are two of his favorite games to play when insomnia strikes. There is nothing inspiring in the kitchen, he was simply avoiding sleeping in his own room and not really wanting to settle down in mine. This is the life of autism that I've come to know lately. This isn't the first insomnia inspired post, and likely won't be the last, either.

We have been working with a caseworker in order to get J qualified for a waiver that would free up money for some of his particular needs, such as a group or host home if he needs it, respite care (much needed), and maybe someone to come into the home to help with his daily care. My dream? Someone who could take the night shift so I'd be more able to manage his day time needs. We aren't so sure that would happen, but as I've said, it's a dream.

We have had well meaning doctors and friends, and even family at times, encourage the Hubs and I to think about placement for J. I will admit that there have been times that something like that would be a blessing. But when it comes right down to it, neither of us want to face that aspect just yet. I know I don't. A chance for J to have community access (translation: day program that gets him out of the house and has the added perk of excursions to restaurants and activities) and respite when we all need a break, yes. Someone else caring for my child 24/7, not. Not yet.

Do I have a problem with other families who choose the option of group homes or host homes(akin to foster homes, but for adults with special needs when a group home isn't suitable, the person cannot live on his own, and family cannot or will not provide care)? Not at all. For a variety of reasons, that conclusion is reached. None of us know what tomorrow holds. The Hubs and I certainly aren't getting any younger. Great health isn't always going to be there. We won't always be there, much as I hate to think about that. And family can't always be counted on to pick up the slack and take in an adult with special needs. These are things that I think about when I'm up nights.

Speaking of my young insomniac child, sleep has finally found him. Dad will need his own rest once he comes in from work in a few hours, so it's time for me to try and get back to dreamland. Have a good morning.

The (Not So Secret) LIfe of J

It's nearly 8 in the morning and I'm up and dressed. Bleary eyed, wanting to crawl back into bed, but I'm up. And J? That not so little turkey is back in bed for his morning nap. And I'm...writing. Because I can. And because my brain said forget it, honey, sleep ain't happening just yet.

I have no idea what time J woke up. The closest I can pinpoint it is between 3 and 5 AM. Unless my laptop is open, time means nothing to me in the dark hours of the morning. We do have a clock/radio but since no one needs to be up at a certain time in the morning, no one bothered to set it the last time a storm knocked the power out. But anyway.  Have I ever told you I'm a morning person? Yeah well, that only applies if "morning" begins at seven AM. 6:30 tops. Earlier than that and I'll look you straight in the eye and tell you it's night time.  The Hubs is a night owl. His work schedule is awesome for him because he's ready to go to bed right about the time I'm getting up to face the day. He usually stays up long enough for breakfast and for us to haggle over his wake up call. 

And J? J is a super night owl. He goes to bed anywhere between 9 and ten in the evening (later if we don't have melatonin in the house). You'd think this would be my cue to hit the sheets as well. Wrong! Well, I toddle off to bed about that time, but my nose is usually buried in a book, Pinterest, or a Murder, She Wrote rerun or two. That's my time to relax and enjoy. By midnight I'm fast asleep. If I'm lucky, so is J. And then... somewhere around three in the morning... J's internal alarm clock goes off and he's wide awake, bouncing off the walls declaring he's hungry (read:BORED!!)

My sleep fogged brain at this point barely registers anything. I open a blood shot eye and squint out the window. Still dark. That means night, folks. So I do what any good parent would do: holler "It's night time! Go to bed!" and pull the the covers over my shoulder and try to get back to sleep. 

Yeah, that lasts about five minutes. Ten if I'm lucky. For the next hour or so it's pretty much lather, rinse, repeat-- oh wait. It's more like bounce, shriek, loud holler, pull the covers up, repeat. It's a small house. His bedroom is right next to mine.  Eventually though, my brain sends signals to the rest of my body that I do in fact have movement in arms and legs --despite the three kitten pileup on my chest and arm. This same brain reminds me that during this back and forth exchange, J is anywhere but in bed. If we had a chandelier, especially one that could hold his weight, he'd be swinging on it. Seriously.
  
While I'm still fighting to remember I'm the Mama and responsible for Baby Bear, he's taking the first of many showers of the day; foraging for snacks in the cabinets (the fridge is locked 98% of the time at night so he can't get into that unless we forget); deciding that no one needs the lemon juice left out on the counter-- down the drain it goes.  So finally my brain gets this message to the rest of me and I'm up. I stumble into the kitchen, fix him a snack and we have a sleep deprived conversation. Eventually one of two things happens: he decides his nightly/early morning job is done and he goes back to bed, or Dad gets home from work and I slink off for an early morning nap. 

Good morning, y'all. See you in an hour or two. Mama needs a nap.

Why I Love Books A Million: A Lesson in Compassion , Professionalism, and Just Plain Niceness

Okay, so my secret is out. I love love looooovvvveeee Books A Million. Absolutely adore it. More specifically, I love the Statesboro, Ga branch. More importantly, I really like the staff. 


I'm a nerd, I'll freely admit. An old school nerd at that. I don't own an e-reader of any type. Yet. Eventually I'm sure one will become mine, and that's cool. But I love (there's that word again. Gracious, how many times is this woman gonna say that word??) real books. The feel, the touch, the smell, all of it. I feel that no home is complete without a wall or two of books. 

But you didn't stop here to hear me wax poetic about paper versus digital. After all, I did mention that the staff is the best part about the store. You see, whether we get to buy anything or not, we like going to BAM to browse and hang out a little sometimes. These trips to the store also include J, who does not share his parents adoration of books, magazines, and such. He is there to eat. He's there to people watch. He's there because he has no choice in the matter. 
  
Most of the time he does well, sitting and waiting until he's bored hopelessly out of his mind and reminds the two bibliophiles he was born to that it's time to go. Loudly. We've been to that particular branch enough times that they recognize us and know that J has autism. Bless their hearts, they are always nice and polite, and have never kicked us out. (We do that ourselves.) Even when J has an accident, it's taken care of quickly and without much fuss, by the staff or us.

 The other day we happened to be in town for a meeting I had. We were at least an hour early so we decided to go to the bookstore.  J did well at first, but he became a little uncomfortable --and loud. He wasn't screaming, just doing his belching noise now and then and moving around a lot. When I noticed the problem,  Dad took J to take care of it and I went in search of a worker. I came up to one just as an older gentleman flagged him down to advise him that "there is a man back there by the exit sign with either a mental or psychological problem." Yes, that is exactly what he said. The young man nodded and moved on. I smiled at the young man with the older gent near enough and said "Yup, it's my son. He  has autism." He assured me there was no problem (the young man, not the other gentleman). I gave him a heads up on the wet chair and he took care of it without a gripe or a fuss. Simple fix of taking out what was wet and bringing in clean chairs from the break room. That was it. He simply did his job and assured me that all was okay. 

 Sadly, in other stores I have seen workers and clients alike frown and make rude comments when J was just being J. Not being obnoxious or loud necessarily, but just flapping his hands or giggling or whatever. Never have I run into this at BAM. Ever. I've had a customer a time or two suggest that I need to "check on him" (he's never unattended because J is usually within eyesight of his Dad if not me). The hubs has had a few strike up conversations with him about autism and even vaccines. It's definitely a family friendly place.

Even in this day and age there are still people though, who believe that kids and adults like J should not be out in public. They don't understand autism, they do not wish to understand (my opinion, although I could be wrong about some), and they do not like having to see or hear anything or anyone that upsets them. J doesn't belong at home all the time, nor does he belong in a home or institution. He's a human being! Part of our teaching him (and this is ongoing) is how to handle himself in public settings. He won't learn that holed up away from others. At the same time, I believe he's teaching others compassion, understanding, and manners. Or at least he could if people would just pay attention instead of frowning and running away. 

So what does my mini rant about rude people have to do with Books A Million?  Not much really, except a lesson in compassion for others, professionalism, and common courtesy. While I think the older gentleman who warned about "the man with mental or psychological problems" handled it as best he could, it's still hurtful and maybe he could have handled it differently. Maybe next time he encounters a person like J he will not be so quick to judge. Or maybe he will choose his words a bit more wisely, especially if someone else is standing nearby. I can only hope. 

A Day in the Life

Good morning, y'all. 

It's about 7:45 am and my patience, sadly, has about run out for the day. Here's the picture so you understand: The day started about 4 am, or just before. I came into the kitchen to find J eating mayonaise and red kidney beans that hadn't been put away the night before.  He scuttles off to bed and I put away the beans and throw out what's left of the mayo. At four in the morning I am nowhere near ready to start the day, so I crawl back into bed myself. Neither of us sleeps. Remember, the Hubs has night shift so he's at work, blissfully unaware that his family is doing anything other than sleeping.
   I check emails, cruise facebook (yeah, my page is mostly dead that time of morning. Everyone is asleep or going to sleep), and finally give up and watch a few episodes of Ducky Dynasty that came in this week.  Is it peaceful here during the video watching? Not even close.
   My bedroom is right next to J's bedroom and I hear the LOUD stimming he's doing in his room. It's a noise that is part teenage obnoxious belch and part explosion. He does this, thinking that's a great way to get my attention and let me know he's hungry. I'm doing my best to ignore the explosions and talk to him when I hear the normal tones. It's about a 75/25 mix these days and it depends on how things are going which way is working, if that makes sense. 
      Fast forward to about seven am. It's finally painfully obvious that sleep is out the window for either of us at this point. So here I am in the kitchen with eggs boiling, J still exploding and making lots of different noises, and eggs are boiling while I sit here typing away. And being used as a perch for two kittens. One on each arm. 
   I'm really not as cranky as I sound. Okay, I am. But not really. I like being up in the mornings, although I'd prefer my own solitary morning routine that smooths the way for the day to J's jump in with both feet and hit the ground running routine. Somehow it will work though. Eventually he will run out of steam and possibly nap. Being a Saturday, it's hard to tell whether I'll  nap at the same time (best bet for today) or guilt will win out and I'll try to prepare for the Lord's day tomorrow. Dishes to be done. Clothes to be put away. So much on the to do list, yet the main one wins out: spending time with the handsome young man who converses in his own language in a way that reminds me of how Native Americans were portrayed in the old spaghetti westerns. Somehow a balance of housework and J time is made.  And patience balances out as well, given a chance.
  Have a great day, y'all. The eggs are done.

Gratituesday: The Blessing of a Simple Date

As I write this, I am happily full from some of the leftovers from last night's dinner. While I do love leftovers ( less to cook), most don't leave me overly excited. This time, however, it's from one of my favorite restaurants. We splurged a little last night, hubby and I did. In celebration of both our birthdays, paying off the car, and just the fact that for the first time in a long, long time, we were alone.
    If you're even the least bit familiar with this blog you know that my son has moderate autism. He is with us all day, every day. But last night, my mom and older brother blessed us with the offer to have J over for the evening and we accepted. At first I was having doubts that we'd even make it out of town before we got the phone call to come get him. After all, he's known to be noisy, loud, rambunctious, and can meltdown in a hurry. But the new medications seem to be working. He did rather well over there and was for the most part, quiet.
  Meanwhile, the hubs and I took this opportunity to dine at a restaurant we both like. The prices are fair and they load you down with a lot of food. In my refrigerator sits enough leftovers to feed at least four people. After dinner we found our way to a few stores, just doing regular shopping that needed to be done for the week and enjoying one another's company. We marveled at how nice it was to be at a grocery store without an adult sized child fretting over being there, shrieking at the top of his lungs to let everyone know he's there, or sitting or lying down in the middle of the aisle because we stopped to compare items. 
   While I don't expect to have one on one dates every week, this one sure was nice. I think J enjoyed the hours away from us as well. Meanwhile, I'll be off to the grocery store once again soon enough because I promised J that I'd make some pizza today for dinner if he did well last night.  

This post is part of Gratituesday. 
Join us for Gratituesday at Heavenly Homemakers!

Catching Up : Autism Update

J had a neurology appointment early this morning and he had a psychiatry appointment on Monday evening. While the main psych wanted J hospitalized to find out the cause of the rages and to even out his meds, neither doctor deemed it necessary at this time. At the moment, I agree with them. 
   The psychiatrist he saw on Monday asked a lot of questions and the end result was a trial of a new behavior med. Not too happy with another pill to add to the mix, but he has been calmer so far. We're reserving judgement at this point because the current trend tends to be that a medicine works great for a month or so then fizzles out and we're back to square one.
     The doctor we saw today fully impressed me. Instead of rushing us in and out of the office in five minutes like the previous neurologist, there were two doctors (the first most likely a resident, as it's a teaching hospital) and both asked lots of questions. J was observed for a few minutes. Then the main doctor, an older, caring gentleman, talked with us. 
   Turns out, one of the anti seizure meds he's taking could possibly be the culprit. And he also thinks that the other anti seizure med may not be the correct one for J's particular seizures. The plan? Step down the dosage of the possible offender, monitor at home to see what happens, and in a little over a month J will have an EEG and a visit with the neurologist. We will go from there depending on the results. 
  Both the Hubs and I, as well as J, were well pleased. We didn't feel rushed at all, J was welcomed in with no problems at all. I love doctors who actually want to do their job instead of listening with half an ear and going with the plan from a previous doctor. 
    As for the plan of action here at the house, we will be going by the doctor's recommendations and I plan on keeping track of J's moods and any seizure activity we see due to the changes. In the meantime, the Hubs and I *just might* get to have a few hours of alone time tomorrow evening after a home visit. It has been entirely too long since we've had time for just the two of us. If it all works out, J will get to spend the evening with his Granny and Uncle. I do hope it works out. J needs a few hours away from us I think.
  Well, the future is looking a little brighter. I'm hanging on to hope and the faith in our Lord that this will all work out.It's not always easy, but I still believe that faith and determination pay off.

Catching Up, Autism, and Understanding: A Little Advice on How to Help and What to Do

***Heads up: The following post is open and honest. I did not hold back, just spoke what was on my mind. Please remember that in no way is there a danger for my son, husband, or myself at this time. There is no need for "heroics" of any type such as anonymously sending "help." Feedback is always welcome as long as it is respectful. Thank you.


Hello all, and happy Monday to you! I know some of my regular readers are probably fainting from shock right now. Whoa! Two posts in two days? I know, right? It's about time i got back in gear with my writing. It's a beautiful hot day here in Gawgia, and both of my guys are napping. That means I can get a lot of cleaning done...or I can write. Guess what I chose? *wink*. Truthfully though, I have the dishes started and I've got a load of laundry out on the line, so I'm not feeling too guilty right now.
    It's been about a month before yesterday since I blogged. I think it was a blend of losing my muse and just being too overwhelmed to write. The autism battle rages on, ya know? There were some days that I was seriously ready to throw in the towel. In fact, there was one day that J woke up ready to fight, and by the time the Hubs got home, I was done. I told him, take him to the emergency room, I don't want to be a mother anymore. And I meant it. I was completely at the end of my rope. We took him to the E/R and told them what was going on. Although we had waited just enough for J to calm down to the point it would be safe to take him, he was still agitated. They ended up giving him a shot to calm him down further, and social workers from Behavioral Health was called in. By the time they got there, it was about two p.m. We had been there since about nine or ten in the morning. I had calmed down some, enough to no longer want to relinquish my son, but I was still simmering. 
     First thing we fired at the poor soul who came to help: He needs to be in a hospital so his meds can be regulated and they can figure out what works.  Pat answer back: The State doesn't do that. Here's what we can do: Yada yada yada. A lot of back and forth, questions asked, blah blah blah. End result? Baby Bear came back home with us with a new prescription to help the rages, a plan was put in motion to get some help (in 9 months to a year after the paperwork is completed, which is currently at a stand still while we wait to hear back from schools and doctors. In other words, red tape), and seven home visits to see what they can do to help. 
  That was about two weeks ago. The home visits are going well. I found out that yes, there are programs for J in this dinky little town --but he isn't eligible for them until he gets accepted for the help described above. Wonderful! And why for the love of all that's merciful, has this been a secret for the two plus years that this area has been aware of his needs??!!?? Aaaarggh!! Seriously, folks, we could have had this ball rolling ages ago, if someone had been nice enough to clue us in. We might could have avoided some of this frustration, ya know? 
  I've always been honest on this blog, especially when it comes to dealing with autism, because it might help someone reading it. I'm going to state here what I told the social workers, and please do not overreact to what I say: Why is there often no help for parents struggling with a child who has a severe case of autism, until the family ends up on the 6 o'clock news because either the parent or the child or both are dead or hurt or something to that effect? It's not all that often that it happens, but folks, it happens. For those about to say it,  NO, the pat answer isn't institutionalization. 
    These are our kids, not common criminals. Think about it for a second: You're in a foreign land and don't really know how to communicate what you need. Something is bothering you, and you have to get someone's attention. The frustration can build until something happens. It's not a pretty sight. 
   Don't worry, J is safe, and so are the Hubs and myself. He's a pretty amazing young man who is really very sweet. Unfortunately, we aren't sure what sets off the rages and this needs to be addressed. He's seeing a new neurologist this week, and we've been told that there is a good chance they will take him as an inpatient to see what can be done. We are hoping and praying that they do.  It will only be for a few days, but this is sorely needed.  If it doesn't go through, his psychiatrist is working on that end for a different hospitalization. Personally, I'm rooting for the neurologist on this one, but either way it needs to be done. And I'm here to tell you, a hospitalization like this shouldn't have to be a last resort, which is what I've been told it is in this state. Doctors, insurance and the state need to stop turning a blind eye to parents who need help.
  Now, those who have kids just diagnosed with autism or recently diagnosed: how does this affect you?  No matter where your child falls on the spectrum, ask questions. What helps are there? Are there programs available? When a child is first diagnosed, the first thing should be Early Intervention. It's like a pre- preschool. They will work with your son or daughter to help them function better in this world. If you'd rather not have them in a public school just yet or want more, ask questions. Read everything you can get your hands on. There are things you can do at home, starting with some of the things they do at school and therapy with the child. There are ideas all over the web for things to do with your child when they are young. 
    Also, ask about the Medicaid Waiver. It will help. There is a waiting list, but get on it ASAP. It cannot hurt to ask. It is better to be over prepared in this case. 
  Get in contact with others who have children or young adults with autism. There are support groups in a lot of cities, so ask your pediatrician or check in the local paper or local parenting newspapers. If none of those are available in your area or you want some one on one information and support, ask. I don't have all the answers obviously, but I've been in the trenches so to speak for nearly twenty years dealing with autism. Feel free to contact me privately if you need someone to talk to. 
   Number one on the list: Set up a support network for yourself. Family, friends, good doctors, websites, etc. Surround yourself with people who will pray for and with you, someone who will babysit for you now and again so you can breathe, someone who will just let you cry and scream and vent. I cannot stress how important a support system is. Trust me on this, I've done the alone thing (along with the Hubs) because it seemed like although some cared, they just didn't know how to help or what to do.  For friends and family of those with a diagnosis of autism, listen up: If you can, offer to give the parents an hour or two by themselves. They need this. If you can't, that's okay. Pray for them continually. Let them know you support them. Prayer helps. Dropping off a meal once in awhile so that's one less thing Mama has to think about is extremely helpful.  Or just plain listening. No judging needed, just being there with a shoulder to cry on can help. 
  While in some ways I chafe at the thought of "it takes a village to raise a child", it comes in pretty handy when you have a special needs child. Support is needed. The world can be a pretty lonely place at times, and when a child with autism is added, it can be even lonelier.
 

Gratituesday: Light It UP Blue 2013

It's that time of year again.

 

If you have never read my blog before, let me introduce you to J Man. 

Yep, that's him. The first picture is an older one from a few years ago, with his uncle Bobby. He adores my brother. The second is one of his quiet moments here at home. J is now twenty years old and he has severe autism. He is not verbal although he is almost never quiet. He is loud, loving, and happy on most occasions. The happier he is, the louder he gets sometimes. If, at the grocery store, you hear a  loud shriek and an infectious giggle, it could be J, letting everyone at the store know that he has arrived. If you see a twenty year old sitting in the aisle looking bored or even lying down, he's not staging a protest of anything but standing. He does not like to stand and wait around while mom and dad hem and haw over what to choose.

   Today I'm thankful to be his mother. (Well, I'm thankful to be his mother every day, even the ones that break my heart, but hopefully you know what I mean). I'm thankful for all the mothers and fathers who are in the trenches day after day, working with their kids, loving them, caring for them, and I'm thankful for the ones who end up making the most painful decision ever : to place their darling child in a school or institution because it's no longer wise to keep the child at home. It's not a decision made lightly and it's done with a lot of swinging pendulum emotions, I imagine. We haven't come to a decision like that yet, but we've seen it on the horizon of our journey a few times. 

    I'm also thankful today for Autism Speaks   and all of the businesses and families and individuals who who participate in Light It UP Blue and promote autism awareness. It's becoming more and more prevalent, with current stats at 1 child in 88 being diagnosed with autism, 1 in 54 for boys. Some put the current stats as 1 in 50 children being diagnosed on the spectrum. Whether because the numbers are growing due to whatever is causing it (I have my own ideas and there seems to be myriad theories out there) or as some would like to suggest, they're simply better at diagnosing it, those numbers are heading in the wrong direction. 

  So what is autism?  (Lifted straight from Autism Speaks: What is Autism) 

  Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Increasing autism awareness is a key aspect of this work and one in which our families and volunteers play an invaluable role. Learn more …
  I tend to say "kids with autism" a lot when discussing it, but the "kids" that people see and tend to accept behaviors of once they know it's autism, grow up to be adults with autism. Mine is one of them. Yes, at times you will see a 20 year old in the throes of a full on melt down. Or you will see him happily waving his arms and singing in his own language. No, he's not on drugs other than medicines prescribed for his seizure disorder. No, he's not drunk or insane. He's either happy or upset or in some cases, having a type of seizure. If you can help, by all means do. If you can't, and simply are judging or in the way when something happens, please move along. Children and adults with autism are not zoo animals to be stared at, nor should they all be "locked up away from society so we will be safe" as one lady put it after a recent shooter was said to be on the autism spectrum. 
  Learn about autism. Ask questions. Wear blue today in honor of our kids and maybe Light it up Blue with the rest of us. Have a blue light on your porch or in your window. Say a prayer for the kids themselves and the parents and dedicated doctors, therapists and caregivers who work with them. And please, teach others.
  This post is share with Heavenly Homemakers for Gratituesday.
Join us for Gratituesday at Heavenly Homemakers!  You'll find many other bloggers that you may enjoy as well. Feel free to add your own post there or tell me in the comments here what you are thankful for. I always enjoy hearing from you..
  

 

     

Life with Autism

Good morning y'all!  It is a chilly, windy day here in my little section of Georgia! And this is my second time waking up. Actually, it was a little earlier, but my brain is working now, I think. The first time we woke up this morning was about five-ish.  J was wide awake causing much mayhem at that time, which means he had been awake for a little while. This is never a good thing.
   Damage report was minimal, although my dish soap is MIA. Yes folks, when J is left to his own devices he turns into a cross between Christopher Lowell, Martha Stewart, and a Zen minimalist and decides what stays, what goes where, and what gets hidden. Because I sometimes forget to put the dish soap out of sight, I've learned to have a few more in reserve (hidden from him). I end up with a few half used bottles floating around once we locate the ones he's banished from his sight, but that's okay. I can deal with that for now.
   Soap (or lack thereof) wasn't the only thing I noticed when I stumbled into the kitchen at O dark thirty. Nope, my two darling felines decided to have an Ozzy Osbourne party sometime in the night. Yes folks, the mighty huntress, who has access to the outside world just as her brother does, decided she needed more protein in her diet and my kitchen just needed more feathers on the floor. Her brother lets her go get her prey then he fights her for it eventually. With the amount of feathers on my floor, more than one bird may have been sacrificed. Ugh. When the sun isn't up yet, it's not time to deal with such matters. My job was to fix a cheddar and mozzarella quesadilla for J Man and convince him to get some sleep. Yeah, apparently his sleep was interrupted shortly after I fell asleep last night. He's currently still slumbering as I write this. He will likely be up a little later tonight but that's okay. This is The Hubs' "Friday" so once he gets home tonight, if J is still awake, I'm not worried about it. They can have father-son bonding time.
   For now, it's time to get back into the kitchen to get some cooking going, prepare tonight's dinner (Ham and Potato soup!), clean up the stray feathers and get the final chapter of the study of Ruth typed up. Hope you have a wonderful day. :)   

The Gift of Time and Motherhood

Have you ever watched children (perhaps your own) arguing? One invariably says "I'm never speaking to you again!" and storms off. Five minutes later they're best friends again. Our ability to forgive and forget should be that easy.
   Yesterday morning was very hard. J was in the midst of a meltdown and The Hubs wasn't too happy himself. All I could think was, this is it. We have to place him in a home. I can't have a normal life here. I can't even keep the place clean. And it wasn't even that bad of a meltdown, as far as those go. If the one he had a few weeks ago when he tore the padding off the roof of the car was a ten on the meltdown scorecard, then this one was at best a 5. We ended up giving him behavior medicine. Calms him down fairly quickly but takes away his appetite and that eventually frustrates us both. 
   The rest of the day was fine. We followed our usual routine and had our music in the afternoon. He loves that. My ears are ringing after music time because he likes it L*O*U*D. But we were both happy. And I was already letting go of the idea that it was time for him to be in  a home. I know that one day that decision will have to be made. After all, I've talked about it a time or two on this blog and numerous times with The Hubs. It's not a decision I want to make, and I don't want it to be made when I'm angry. That will only lead to regret. 
  This morning I woke from a dream in which some guy was accusing J of taking his soda and drinking from it. Possible, because I've seen him do it to family members. We're still working on personal space and property. In the dream I explained that he was autistic and replaced the soda, but the man was in the corner with his wife loudly proclaiming that, in so many words, autism is  a scam. I told the man to shush. I've seen rude people before, but sheesh! In my dream that worked. But I woke up from the dream and heard J already awake and upset. He'd gone to bed without much dinner because of the effects of the medicine, and he was understandably hungry! So now I'm typing away and after being fed, he's happily rocking in his chair. 
   I've been a mother for over 20 years and I'm still learning. There are days when I wish that life could be a bit more normal and he'd be at college or otherwise on his own. At the very least somewhere else. But I'd miss his happy chatter each day. I'd miss the smiles and the hugs that rarely appear but do show up from time to time, making them more precious than diamonds to me. 
   This is new territory for us, having an adult in the house with a largely child like mind. There are things he simply does not understand so he handles them the only way he can. But we'll figure it out. We have time. For now I'll continue to enjoy life as a mom. 

This post is linked to Heavenly Homemakers Gratituesday.
and Titus2sdays.  Please check out both and connect to other women.

Mama on a Mission: Caring for Adult Children with Autism

Here in Georgia, autism is in the news. Thanks to Ava's Law, kids with autism may just be covered by insurance. This is wonderful news because our children need so much care. ABA, speech therapy, occupational therapy, to name a few and none of this comes cheap. In fact, so many get dropped through the cracks of the system as it is right now because parents can't afford it and schools do little enough to help. Argue with me if you must but that's what I've seen of a few different school districts in a few different states including this one.
  As the mother of an adult with autism, though, I tend to wonder just how much Ava's Law would benefit my son. Will he be able to access speech and behavioral therapy? Would he be able to see a DAN! doctor? I have a lot to learn about this particular piece of legislature but no matter what I will support it fully. It is a struggle and a half to reach our kids sometimes, and bring them to the point of saying "mama" or following directions, and continuing on. 
  Looking further into the future, I'm dealing with the question of what happens to J if something happens to The Hubby and me, or if he just cannot live with us anymore because he is a danger to himself or us? It's not something I like to think about, but it's a possibility that I cannot ignore. The following is something I wrote on my facebook page yesterday:(This is straight from my page, no modifications, just what I wrote as I felt it)

 Warning: I'm on a rant. Don't have to agree with anything I say, don't have to read it. I just want to get all this written down and out in black and white . Do you know how hard it is to raise a special needs child? I mean, really know. Doctor's appointments, dealing with school IEPs and battling with teachers and aides who don't want to do their job, trying to figure out how to potty train a child who doesn't always understand. Then paying for pullups on your own because it's not covered elsewhere. I get it . He's mine. I love him. I adore him. He's my responsibilities and if I had my way I'd be able to provide for him without any help. Not in this country of high taxes. Won't. Ever. Happen. Then the child grows to be an adult and thoughts come up. What happens when I die? Who will take care of him then? Can I manage to keep him in my home even until I die? And of course while we're struggling with decisions like that, somebody or other pipes up and says "someday he will *have* to go to a home. Well meaning. I get it. But I have to say, Maybe. Maybe not. Very easy for someone to say when they don't have a special needs child to raise and care for and love.
So you start looking online. Where to start? Google. Uh huh. A list a mile and a half long that is 85% senior care, if not more than that. A very small handful of places that specifically state home for persons with autism. All NOWHERE NEAR HERE!!!!! Other facilities are listed just as a name and and address and phone number. No clue whether they are foster, residential, senior care, or a pizza joint. Not happening.
Step two: Google again and find an autism website that lists residential care. Click on that. Click again on the state. Still a bunch of pure, unadulterated bull, along with some businesses that may or may not be residential. Case in point? The only help in my area that I keep getting sent to, Hereby known as Bluebeard's Bluff Behavioral Business (Obviously fake but some readers would know it in a heartbeat and may try to defend them. Don't do it. I'm not in the mood.) Bluebeard's has *NOTHING* to do with residential care. They give out halfway good advice, listen with a third of an ear, and hand out scripts for meds that would stun a moose and keep him drooling for days. So. Not. Happening. There is one place that could help but with someone's work schedule, NOT possible. Respite? HA!!! Not in this area.
In this state your loved one has to be in a place halfway across the state from you, be placed in a mental institution (NOT acceptable), or you keep them with you until you die or they become too unmanageable to keep at home and we're back to square one. Having a special needs child is not for the weak of heart or the poor. But poor I am. As I said before, He's mine. I want to do what's best for him. There has to be something better than what this state is offering, cuz moving out of state is not an option unless it's the one to the right, and I'd so love that. Still looking for a house, especially in that area. Maybe, just maybe, they have better options. Until then though, I'm stuck in this area.
Am I ready to find a residential place for him? Nope. I think I am at times, but folks, I'm his mother. I trust no one , especially when it comes to strangers, with his care. I also know his behavior, and I've seen an aunt moved from home to home to home till no one can tell us where she is -- because of her behaviour. I will not have that happen to my son. I've seen headlines about parents and what they've done and went right along with everyone else with the how dare they's and the how could they's. I know how dare they and how could they. It's called desperation. This is NOT some post that someone will point to and say she needs him taken away blah blah blah. Just ranting to hear myself rant, folks. He's mine and trust me, I'd be the first to do something if I thought either of us was in danger. I just need some direction. And GA needs to get with the program and get its collective head out of the sand because autism is not going away.

    As you can see I had a lot to say.Mama got frustrated to say the least! But I have plans to contact my representatives about this soon, and I also have a dream. I would love to see residential/day facilities in each county or at least in tri-county areas that will benefit those with autism. I would love to see it privately funded if possible. If I ever become successful enough in my writing to the point that i could do it for at least one area, I will. If God wills it, I would love to see this help come about. I'm still in the thinking stages of what is needed, but I'd love your input as well, if you are the parent/caregiver of a child or adult child with autism.